http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=8125
Tue, 23 Apr 2013 13:13:59 +0000PunBB 1.4.2http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=73968#p73968
Dear sandie, everyone is different when they hear the word 'cancer' .Some cannot handle this difficult draw card from lifes deck, and they shut down in many different ways. I mentioned inner strength and courage when dealing with this for yourself, it is just as tough to deal with these things when your wife has this. He does not have the strength to face all the possibilities, so he self medicated with alcohol to ease the pain of thinking about it.Weak people are the first to turn their back on you, it is their defense mechanism. I was divorced 4 months before I was diagnosed. I am sorry your partner did not have the strength to share the burden, but you sound as if you are dealing with it. Seek others who are positive and have the strength to smile a sincere smile when they see you, these are the people you can gather the strength from you need to survive.Please remain strong and I will be praying for you, Pat]]>Tue, 23 Apr 2013 13:13:59 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=73968#p73968http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=73881#p73881
Dear Sandie, it just doesn't seem fair to have to deal with other issues as if CC is not enough. When I divorced Brand X many years ago, I was alone until I met Teddy 7 years later (well, almost alone!) we were married 16 years and I really believe those years of being alone before Teddy, helped me to prepare for now. I always try to turn the negative in to a positive. Taking care of someone else while being your own Caretaker, leaves no energy or positivity (is that a word?) for yourself. Job well done. Like I keep saying God has plans and doesn't have to ask us first for permission. BTW Teddy and I laughed the whole way through from his 1st ONC visit to his last day. In the meantime I LOVE your attitude. Take Care!]]>Sun, 21 Apr 2013 19:36:33 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=73881#p73881http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=73879#p73879
Hello again and especially to Pat who wrote recently. The mental side of recovery is as important as the physical and, as Pat so rightly said, having a positive attitude is important for one's well being. I also think regular exercise, healthy eating and endless laughter are all in the melting pot to add up to a good recipe. My own issues were exacerbated by the fact that my husband could not cope with my cancer and drunk heavily leaving me feeling very vulnerable and fragile We are no longer together and I am having to rebuild a new life too. Hey ho, these things are sent to try us! So, another strategy I found was to create events for the future to look forward to .... next week, next month, ext year ... Whatever happens I feel so very lucky that I am even here to be able to contribute to this discussion. I firmly believe God has plans for me and I have yet to fulfil those plans, which is why I am still here.Love to you allxxx]]>Sun, 21 Apr 2013 19:18:27 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=73879#p73879http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=73848#p73848
I second Randi, dear Pat.]]>Sun, 21 Apr 2013 00:29:19 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=73848#p73848http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=73847#p73847
Well said Pat!]]>Sat, 20 Apr 2013 23:02:41 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=73847#p73847http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=73822#p73822
Hello Sandie, I am Pat, a stage one survivor and while I have not had to deal with chemo or other treatments many have I think we all live with the knowledge that this can come back.I have held the hand of others going through a reoccurance and it is a truly difficult emotional ordeal for the patient and everyone who really cares for this person. It is perhaps one of the most difficult tests life can give your soul. It demands inner strength, courage, and a little personal discipline to keep your cool. Life is not fair, it is true, and you accept every sunrise with the hope that the fairness needle swings your way today.When something goes wrong sadness is o k and accepted, but there is a fine line to where you let things overwhelm you and it snowballs from there. You are here for a reason and focus on what makes you smile and ignites a passion in you like a hobby or sport. I live with a 12 year old golden retriever and he makes me laugh all the time, his personality is hilarious! I seek positive thoughts and find peace with myself. God bless Sandie, Pat]]>Sat, 20 Apr 2013 14:13:27 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=73822#p73822http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=72599#p72599
Bob, I think you are right, sometimes a little scientific intervention is good. I have seen my doctor again and we have reviewed my meds and with a few tweaks I am beginning to feel calmer, but appreciate there is some way to go. Thank you Bob for your empathy. Faith, you are so brave and I will be praying for and thinking of you. You are amazing keeping down a job and coping with your cc journey. love to you. Sandie x]]>Tue, 19 Mar 2013 22:43:41 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=72599#p72599http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=72180#p72180
Hi Faith,

Welcome to the site. Sorry that you had to find us all and I'm sorry to hear what you've been and going through. But thats great that you've joined us here as you are in the right place for support and help, and I just know that you will get loads of both from everyone here.

Thanks for sharing your story with us all. I do hope that you will keep coming back here as I am sure that you'll get a lot from doing so. My fingers are crossed for your ultrasound and please let us know how that goes. We are here for you.

Best wishes,

Gavin

]]>Sun, 10 Mar 2013 15:01:07 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=72180#p72180http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=72164#p72164
Hello, Faith. I had just posted you on your 1st post and then here you are answering my questions! You are still a Super Hero and it also shows how important those 2nd and 3rd opinions are. Your husbnd is a life saver in many ways. Please let us know how the Ultra Sounds go as we truly care.]]>Sat, 09 Mar 2013 20:38:19 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=72164#p72164http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=72162#p72162
Hello Sandie. My name is Faith I live in the US in the beautiful State of Ohio. I have Stage IV and I'm not curable but treatable. My cancer is in my bile duct of my liver and I have a stent in my biliary tree. Due to tissue forming over my stent I get it replaced about every 3 and half months. I work a full time job and I have a very caring knowledgeable husband who gave me CPR when our local hospital gave me to much medication and I flat lined. The nurse ran for help and my husband started CPR this all occurred November 8, 2011. I was first given 2 months and then 6 months and after 7 months of being with a incompetent doctor I found an oncologist who is magnificent. I understand statistics give me between 8 to 15 months and I celebrated my 15 month anniversary (sort of) March 2, 2013. I get treatment every other week and the treatment is aggresive. I'm on oxaliplatin and 5-FU. It took my cancer markers from 1925 to 28. I was doing well for about 2 months and my past two visits with my doctor my liver phosphates are up to 175 so Monday I go for an ultrasound. I hope this response finds you doing well and I will pray for you. I have several people praying for me and I will add you to the list if that is alll right with you. Take care.]]>Sat, 09 Mar 2013 20:32:36 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=72162#p72162http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=72129#p72129
Hi Sandie, I have beeen readng your posts to catch up on your story. I felt a real kinship as you began to talk about the mental stress even while physically you are doing well. During the difficult recovery from my last surgery, I felt that at any time I was going to end up back in the hospital. I felt that I was not getting any better even though I would have some good days interspersed with difficult days. Both the surgeon and my GI doc ran a number of tests and found that, as the surgeon said, "on paper you look great" - I was recovering as expected yet I felt miserable. The GI doc finally suggested that I take xanax "as needed". I can tell you that I reacted poorly to that. To begin with I am a large man - 6'3" over 200lbs. I've always considered myself to be able to handle anything and furthermore, as a Christian, "I don't need drugs - I have the Living God". I sure didn't need some sissy drug. The GI suggested that "perhaps" I was suffering from some sort of PTSD. "Afterall" she said, "you have been hospitalized twenty some times in the last couple of years and have just had a traumatic surgery. Just maybe, your body is reacting to the trauma". I finally surrendered and began taking the xanax "as needed" and found that though it didn't immediately relieve all symptoms, it allowed my mind to not fixate and exagerate everything. It also allowed me to come back to the place of expressing more gratitude than grief and through that find peace in the knowledge that God was afterall in control. I will be praying that God will indeed grant you peace as well...

bob

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Sandie, you are the little engine that could! I know I can. I know I can. I agree so much with everything Randi said, so will not repeat. I do have something though that I would like to ask you and other CC patients.Bruce worked hard at compiling some statistics that he posted today about CC and time frames. I opened his post then yours and I had to start wondering....we are a free open forum BUT we try so hard to give hope and miracles so is a post like that too disturbing to you all. What I am trying to say is should it be a "closed" post that one can open if one wants to or should it be an open post that you all want to see. I hope you all understand what I am trying to say, my mind is not clear yet, still on mega Prednisone. I truly hope you can start to "relax" more in your own mind. I heard a good one the other day. God has a plan and he dopesn't have to ask us! Be strong girl, we are all behind you!]]>Sat, 09 Mar 2013 01:05:15 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=72123#p72123http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=72120#p72120
Dearest Sandie,

I am so glad to hear that physically you are doing well and that you recognize that you need help with your mental health. Sounds like you are doing the right things to get through this time.

As far as why you and not others...that is a question that no one can answer. I ask myself the same thing at times, but I just have to accept that this is part of a bigger plan.

Worrying about recurrence is normal, but letting it keep you from enjoying the moment is probably not good. Seeing a counselor is a great idea and anti-depressants should be helping you. If they are not, if the tigers and endless questions do not stop, you may want to ask for another medication. There are many and not all of them work for all people, but there is one out there that should help you.

I want you to know that I am here for you. Please feel free to contact me by email (randi.barrell@gmail.com). I would love to hear from you.

Thinking of you and sending lots of hugs.-Randi-

]]>Sat, 09 Mar 2013 00:24:00 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=72120#p72120http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=72116#p72116
Dear ChezwrightThank you for your message. I know others will read this too, so I will behonest in answering your question as to how I am. Physically I feel fine, I try to exercise every day and eat good healthy food and love living. I never say no to an opportunity and I laugh and giggle every day. Mentally is a different story ... I don't know how to describe how I feel ... my doctor says I have post traumatic stress disorder. I have a wonderful network of friends and family and feel surrounded by love and to the world I try to be happy and always smiling. Yet at night the tigers come bringing their endless questions ... will it recur, why did I survive, why can't others be so lucky, why does it hurt to be alive, why do I feel lost .... ? I now have counselling and take antidepressants and sleeping tablets. I like to believe that this is another part of my CC journey and if I can overcome this part, which I will, and understand it, maybe I can help someone else who travels this painful path. My motto is .... because I can .... everything I do is simply because I can and I desperately want other CC patients to one day say the same. Thank you for asking after me and I so hope you are doing well too. With loveSandie x]]>Fri, 08 Mar 2013 23:37:55 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=72116#p72116http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=72016#p72016
I am checking the messages over a period I missed and notice this one from Sandie. I am wondering how you are doing? I, too, (and many others, too) had a hard time dealing with this diagnosis and the following physical and mental roller coaster. Let us know how you are...it has been 9 months (I'll check to see if there are other threads with you in it), but I am so glad to hear about this scan and to know that things are looking brighter for you. The diagnosis really is an upfront visit with mortality, but there is a lot of hope and support here. I hope you continue to do well......]]>Wed, 06 Mar 2013 22:31:22 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=72016#p72016